The purpose of this article is to share one family’s experience of rearing a child with a progressive, degenerative special health care need and to provide a nutrition case study of Matt. The article will include medical and nutrition information with candid comments about the reality of raising a child with special health care needs. Included in the family experience will be comments on family-centered care and parent-professional partnership and a look at the myriad of systems, services, and professionals with whom a family interacts on a daily basis as well as over time. For the reader, the goal of this article is to equip you to provide sensitive, family-centered nutrition care in partnership with families to all children with special health care needs and, specifically, to those children with rare degenerative conditions. Matt’s mother tells their family’s story.
17(2) Families as Partners – A view of a family and their child with a progressive, degenerative special health care need
This entry was posted in General Topics Related to CSHCN, Uncategorized and tagged behavior, development, family centered care, feeding, growth, Hunter syndrome, metabolic disorders, mucopolysaccharidoses, team members, transition. Bookmark the permalink.